EmersonAilidh

Thank you thank you thank you!!! & I haven't read it but I will tomorrow! It is bedtime for now. Thanks for the link! & no, I was not. Good luck getting abx in Texas, hahah. I was referred to two doctors but I'm not too entirely sure where we go from here. First thing, tests for secondary/co-infections. Already positive for IGG MycoP. No IGM run. Still have Bartonella, Babesia, Ehrlichiosis, & everything else left, hah. Testing positive on those would make abx SO easier to obtain. Yes, I've heard of STARI. I'm no tick expert but it makes me mad). I just find it hard to believe that a tick that's been found to carry Borrelia Burgdorferi can cause ANOTHER illness that presents with virtually the same symptoms, is treated with the same antibiotics, & is even found in the Lyme region. Funny how you can get SOUTHERN tick-associated rash illness in New England, but you can't get Lyme Disease in the south. It just seems like another excuse for doctors not to accept Lyme, if you ask me. Who knows though. We're getting co infection & secondary infection tests run before going out of state. If those come back positive it would be much more likely that I could get antibiotics HERE instead of in Louisiana, Missouri, or Colorado.

Thank you thank you thank you!!! & I haven't read it but I will tomorrow! It is bedtime for now. Thanks for the link! & no, I was not. Good luck getting abx in Texas, hahah. I was referred to two doctors but I'm not too entirely sure where we go from here. First thing, tests for secondary/co-infections. Already positive for IGG MycoP. No IGM run. Still have Bartonella, Babesia, Ehrlichiosis, & everything else left, hah. Testing positive on those would make abx SO easier to obtain.

Oh! Okay! I've read about LYMErix & the DearBorn Criteria & all that. So IgeNeX is really just a broader test, but doesn't test differently than the Western Blots run by LabCorp., etc..? Thank you so much! & believe me, I am not at all disheartened by the dx. If anything it's nothing but a relief. I feel vindicated. Now, time for healing, knowing that I've been right all along. It's a wonderful feeling! I've been sick for years. There's no reason to be sad about the fact that it has a name now.

Hello hello hello, new Lyme family. After the positive test on August 20th I got my diagnosis today. Thank you all for helping me get to this point!! I did wanna ask two things. As you've all probably noticed, I'm far too curious for my own good. But oh well. I was just wondering why exactly IGeNeX is seen as preferable. I mean, I know Western Blots are a joke but I'm just confused as to what exactly separates the IGeNeX tests from the others. Why is it used by so many on here, but so few doctors out there? & also, how does ART muscle testing work? I had it done for the first time today & when he told me I had Lyme Disease at the end I just kind of sat there for a second like "Wait. What??". I don't doubt it, I've seen the statistics & heard stories from people who have had the same tests done, I just don't get what they're doing. What is in the little things that they put on you while they're doing the test? & what exactly does it do?? Sorry, just full of questions tonight.

SarahJane ~ I've gotten back on schedule!!! Sleeping in my bed is so much better than on a desk at school, hahaha. Thank you! I'm excited. FixIt ~ Absolutely! I believe so too. It's hard to imagine having P.A.N.D.A.S. & then a SEPARATE BiPolar Disorder. I mean, I'm pretty unlucky, but I would want a trophy if my luck was THAT crappy. EAMom ~ Once again, the line between P.A.N.D.A.S. & Lyme is beyond blurred, but I definitely think, scratch that, know, that the "BiPolar"/"ADHD" are tied to either or both. Whoooooo knows, really? My ASO titers were low (can't remember the exact number...) in August & that was the last time I had them run. AntiDnase-B was 85, also. That was about two months after the last suspected strep infection that the Madre never took me to the doctor for. Third negative titer/strep test in general EVER! Go me. It's the small things in life. Vickie ~ No, she didn't do the three word thing (I've SEEN that but never had it done to me) but I didn't bring up any cognitive issues. It's so overwhelming when a doctor asks "What's going on?". Everything is going on!!! Listing all of them would take the whole appointment. ALSO! I've been a bit post-happy lately & don't wanna clog up the forums with my little ramblings, but guess who got her Lyme diagnosis?? I'll give you a hint. It's starts with an E & ends with a Merson. & she's kind of sort of ecstatic right about now. Thank you, ART muscle testing! Calling another referral tomorrow to see about... Oh. Ya know. That one thing.... Treatment??? I am quite the happy camper.<333

"Lyme AB Negative" is the first test, the precursor one. Still doesn't mean that Lyme isn't at play though. My Western Blot was a blood test but I have heard of spinal fluid tests, too. Sorry I can't help more, that's all I got. :/

Lyme is.... about as confusing as it comes, hahah. If I explained everything about why the tests are innacurate & why doctors treat it the way they do I'd take up this whole page. Lyme is a disease rife with politics on the part of most of the doctors describing & researching it. One of the reasons Lyme is so misunderstood is because the symptoms are debatebly even broader than those of P.A.N.D.A.S. Originally it was solely a rheumatological disease consisting of migratory joint pain & a rash, but as the years go by doctors seem to be finding it difficult to wrap their heads around the idea that the offending bacteria (B. Burgdorferi) can effectively inhabit whatever it feels like. Nerves, muscles, even the brain. As the definition of the disease gets wider, the tests get stricter & the possibility of proper diagnosis & treatment gets slimmer because more & more doctors are too busy stroking their egos to accept that Lyme is a multi-systemic, persistent disease (meaning that it isn't always taken care of with one round of abx). For example, two of the proteins seen as so diagnostic for Lyme that they were the primary ingredients in a vaccine for it are not on the Western Blot. Lyme very well may be overdiagnosed in some areas, especially New England, but here in Texas there is not a single LLMD even though we have more than our fair share of ticks. Why? Because state law makes it illegal to treat third-stage Lyme (the type of Lyme you read about on this forum). Every LLMD has had their license revoked or has retired/switched fields to prevent prosecution. Good luck getting diagnosed in the dirty South. Sorry for all that info, but that's basically Lyme in a nutshell. If he doesn't present with physical symptoms, the main differentiator between P.A.N.D.A.S. & Lyme & an ELISA test comes up negative, I wouldn't worry about it, but it's just something to check before starting steroids. Pinpointing P.A.N.D.A.S. was easy in my case. Getting diagnosed, not so much. I was skyhigh for GABHs literally every single time I was swabbed until I was fourteen. Since then, I've only had two negative tests. My symptoms can be traced back to when I was four but the "symptom explosion" that came about when I was eleven we now kind of blame on Lyme. I had been seeing a neurologist who did little more than stock my medicine cabinet for about a year before a psychologist showed me P.A.N.D.A.S. after I mentioned how much school I had missed from strep (that was almost always asymptomatic). She diagnosed me, although I'm not too entirely sure how much a psychologist's diagnosis counts for, & my neurologist's exact words were "You are a textbook case of P.A.N.D.A.S., but it doesn't exist." -____-

ElJoMom ~ The lines of my story are a little blurred because we are looking at possibly multiple problems now, but this is basically how it went for me. I got my first tic at four, which was just a weird mouthing thing, & I've had OCD/anxiety issues since as far back as I can remember. In the sixth grade I had what I've come to call my "symptom explosion", which was when I woke up one day with literally debilitating twitches. Screaming, flailing, hitting. Every single part of my body, every movement imaginable, every word & sound you can think of. I was placed in the special ed room on bad days while doctors continued to throw pharmaceuticals at me to no avail. It took about nine months for the tics to subside (they are most definitely still around, just not so explosive) in my case. Tourette's is thought to be genetic, but so is P.A.N.D.A.S. (although I'm sure there are some who would disagree). The one thing I'm a stickler about is finding the infection. Everyone on here gets so caught up in symptoms & tests & such that no one seems to pay enough attention to pinpointing what the infection possibly was. It very well could be P.A.N.D.A.S., but if it was something like Tourette's (which is more likely than usual if it's in the family) I would hate to see a child go through IVIG or weeks of antibiotics when it's not doing them any good. ALSO. I don't know where you guys live or if your daughter's ever been bitten by a tick, but make sure to rule out Lyme Disease before beginning any steroids. It's common among us P.A.N.D.A.S. kids & is made worse by steroids, so it's just something to check on before you start anything like Prednisone. Good luck!!! Have a good weekend. <3

I think you can have only one thing as a presentation to an illness, ie just rages, just tics, just anorexia i think each person has a specific or specific group of presentations to desease, that they are prone to exhibit. now if you stay ill long enough, others presentations might emerge as the body gets tired and the invading germ is winning I think that everyone has their "main" symptoms but I don't think it's right to say that you can have only one thing as an initial presentation of an illness. Lots of overnight onset P.A.N.D.A.S. kids wake up with multiple presentations at once. Sorry if I misunderstood what you were trying to say. :/

Such a great discussion! I remember not knowing what Lyme was when reading about it on the forum & wondering why these ticks seemed to love P.A.N.D.A.S. kids so much. I think the reason that they're both seen together so often (as opposed to the getting struck by lightning ten times theory, as someone has proposed) is that for the most part, but certainly not always, P.A.N.D.A.S. kids have crap immune systems. I know I do. This is all just speculation & I'm a baby as far as Lyme goes (only been looking into it for about three months), so forgive me if I'm off base, but the way I look at it is that if anyone in the class has strep/the flu/whatever else, guess who's getting it?? ME, & every other P.A.N.D.A.S. kid. I don't believe it's possible that everyone who's ever been bitten by a tick carrying B. Burgdorferi ended up with Lyme Disease. I DO think it's possible that every P.A.N.D.A.S. kid who finds themselves in the same situation could, simply because the vast majority of us are immunocompromised or just plain old immunolaz. Except for when it comes the antineuronal ones working overtime, of course. Short & sweet, we are more prone to developing infection than the general population. Not only that, but I think that we're more prone to generating an autoimmune trigger as well, since it seems that multiple autoimmune dysfunctions are the rule & not the exception. The one psychiatric distinction that I can think of is just that I hear of more frequent & more intense cognitive fog/impairment in Lyme than in P.A.N.D.A.S., which isn't even really a distinction, haha. I think that disorders with mechanisms as broad & uninhibited as "bacteria inhabiting the nervous system" (Neuroborreliosis) & "antibodies attacking the brain" (P.A.N.D.A.S.) are bound to end up with the same "catch-all" symptoms. As has been said before, the physical symptoms are the main differentiator, as the only physical I symptom I really hear P.A.N.D.A.S. kids dealing with are the gastrointestinal issues every now & then. When the doctor in August asked if I had been bitten by a tick my response was "Well, yeah. About a year... OH MY GOD." as a little lightbulb popped above my head. *ding* At that point I honestly didn't even know that Lyme was transmitted by ticks. He ran the test simply to rule it out & very confused when it came back positive. Only more confused when the second test came back "negative" (his words when it really came back non-reactive). Also positive for MycoP IGG, never tested for IGM. All I knew at the time was that I finally had a possible explanation for the physical pain, I had some weird tests, & in all of my experience I had never once had a doctor hang up & wash his hands of me like that. The more I read the more I realized what a hotbed of contention I had stumbled upon, especially in Texas where there is not a single LLMD because The Texas Medical Board is more than a little triggerhappy with revoking licenses for treating third-stage Lyme. I wouldn't dream of going so far as to say that I have Lyme for now, but I will say that it would make too much sense to dismiss the idea. Appointment with a doctor on Monday just to ask if this is something worth pursuing in my case, or if it's time to go down another road.

Saw a new neurologist in Dallas yesterday. The appointment was basically just to say "Hey, this is what's up" & touch base with her. She was the sweetest woman! She was from Iran. Our main objective was to mention the abnormal EEG, the fatigue, & my headaches (which have been increasing in severity & frequency as of late). First & foremost, she is P.A.N.D.A.S. receptive. Yay! I told her that Dr. K (via email) & a local psychologist had both told me they believed I had it & she basically said "With your history of strep & your symptoms it would be hard not to make some connection" but mostly focused on the individual symptoms present currently as opposed to the whole picture. Some might not like that, but at the time I'll take what I can get. We still have more to look into & do before any bigtime treatment options are considered. She looked over the EEG papers (LOVE having my medical records ) & told us not to worry about them. She said that about 2% of the healthy population will have an abnormal EEG. I didn't feel like getting into it by mentioning that I'm definitely not a part of the "healthy population" but I already have another overnight EEG scheduled so I just didn't get into it with her. There were bigger fish to fry, I suppose. When we brought up the headaches she said she agreed with me that they didn't seem to be migraines even though my Mom has them. She coded them as "nonspecific migraines" for the time being though when she prescribed me daily Nadolol (increasing dosage for the next four weeks & then a plateau) to prevent the headaches & Maxalt to stop a headache in its tracks when it does come. I have been med-free for about a year & am normally all-too-skiddish about taking pills (good luck even getting me to take Advil or Tylenol), but these headaches just keep snowballing & have been keeping me from going to school. Normally I refuse to take meds without first looking into the cause, but I have some hunches & I just cannot deal with these headaches. I don't care if we're just throwing pills at it for now. During the physical exam she touched my shoulders & I just automatically teared up it hurt so bad. NO doctor has ever taken the time to squeeze my shoulders, no matter how much I complain about them. We mentioned Dystonia to her & she just kind of nodded her head. Now that I think about it she really didn't seem to acknowledge it much, hahah. She said she didn't believe Lyme to be at play here, but added that she wasn't knowledgeable & could offer no alternative explanation at the time. She, like the old neurologist, did suggest that ADHD & BiPolar Disorder were both probably present & recommended that I see a psychiatrist. Just... Not even gonna get into how I feel about therapy right now, hahah. Besides the shoulder thing she did SO many things in the physical exam that I had literally never once seen before. She made me catch & throw a ball. She made me walk around so she could hear my ankles popping. She made me touch my nose, then her finger, nose, finger, nose, finger... Just all of these new things. She asked TONS of specific questions that I had never been asked before, as well. She recommended some new brain imaging since the last time I had that done was an MRI in 2006, also. I was not about to leave another neurologist's office with nothing more than prescription pads yet again though. I asked her why she was prescribing headache medication but didn't seem to suggest much regarding anything else. I'll admit, although she made a fantastic first impression by giving me something other than a tap with a reflex hammer & a light in my ears, I was still a bit uneasy until I asked this question. She said that unlike my previous doctors, she planned on tackling what she admitted was a pretty daunting & complicated situation one thing at a time. She didn't want me to get stuck in the situation that I was fiveish years ago where we had no idea which treatment was doing what for which symptom. She told me to see a Lyme doctor about the Lyme (October 18th) & the polysomnography doctor about the fatigue/Narcoleptic symptoms & EEG (They're scheduled soon but don't remember the date..), then come back to her in December when I had been taking the headache medication long enough to decide how I felt about it & when I knew more definitively about the Lyme. She suggested the polysomnography anyway (didn't recommend further EEG but I just want to make sure), but we already had the appointments so we just kept them with another doctor. I figure if two is better than one, than three couldn't be a bad idea, haha. Only one day into the Nadolol, have yet to need the Maltax (cross your fingers), but I am optimistic about much more than the headaches. I have been staying up soooooo late lately. :/ Bleh. Been bad about that. Slept through every single class today (which was my first full day of school since last Wednesday), dropped my pencil everytime I tried to work, & smacked my head on my desk in first period. I just feel worse everyday. I think that part of the reason I'm so optimistic is that part of me really believes that something has GOT to give. I'm just so tired of feeling like this.:/ Goodnight, all. I hope you're doing well. <3

My Mom is pretty understanding & let me stay home until the headache abated today. She gets migraines, but for some reason I just really don't think that's what these are. They're nothing like her headaches, first off, & I'm not sensitive to light or sound. When I sit or stand up it seriously feels like what I would imagine getting hit in the head with a hammer feels like. When it throbs, which it always does, it travels. If it's in my neck you can SEE it throbbing. If it's in my head I can feel the fabric of my pillow actually moving to the "rhythm" of the throb when I lie down. It's so powerful that on the rare occasion it moves to my jaw it seriously makes my teeth chatter. EAMom ~ My Mom has Imitrex for her migraines & has offered it to me more than once but I am more than a bit skittish when it comes to pills. Plus, I know that the Imitrex makes her feel pretty bad when she takes it so I'm a bit warier than usual. :/ EmmaLily ~ When it gets bad I always consider homeschool/homebound status/whatever else, but I really do enjoy pushing through the typical school experience. My school might be horrible & I might hate having to go even when I feel terrible, but if anyone understands what I mean when I say that it's nice to just do something NORMAL, it would be you. I would like to just remain in public school & get it over with, but every now & then I have my moments of weakness where I wonder if that's the best idea. TPotter ~ Thank you! I can't imagine my district/school would be very accommodating as far as homebound or anything like that is concerned, but it's a nice option to have in the back of my mind. Conveniently enough, I have an appointment with a NEW neurologist tomorrow at 2:30. Main things I plan on bringing up are the headaches & the abnormal EEG results that were never looked into. I have a consult with a polysomnography specialist (can't remember when though), but could a neurologist also deal with or at least shed some light on the Narcoleptic symptoms?

Everytime I wake up with one of my headaches it gets a little harder to push myself to get out of bed & go to school. It's not just a little headache. Everytime I move even the slightest bit it feels like I might vomit. It feels like someone is pinching my entire brain. It hurts so bad. If I'm being totally honest I chose to type this over finishing my makeup because I know that if I don't do it right now I won't be able to once this headache right now gets worse. When I have them at home I lay down & don't move or speak for literally hours. When I get them in school it's just beyond miserable. What exactly is homebound status?? Do you get to take all of the same classes as if you were going to school? Like, advanced classes & electives & stuff. They send a tutor to YOU? Or you find one? I'm just wondering about everyone's experiences with this because I am so tired of teachers accusing me of not paying attention when really all of my attention & concentration is just devoted to sitting up straight & not crying.

Thank you soooo much!! That list was exactly what I needed. I remember most of the book but there were some things that slipped through. :/ & I got in touch with the TLDA in August. They said the same thing as ILADS & DFW Lyme... No LLMDs in Texas. We have an appointment with a "Lyme-Receptive" doctor on the eighteenth to look into a clinical diagnosis/more testing & depending on how that goes we'll either be heading out of state to pursue treatment or head down another avenue.

Finished Cure Unknown by Pamela Weintraub today & have an appointment with a "Lyme-receptive" doctor on the 18th (no LLMDs in Texas. Go figure). I understood the vast majority of the book but was wondering if anyone could provide a list of what antibiotics did what.. Which ones are intracellular, which ones pass the BBB, which ones attack cell wall, etc.... Thank you for your help, you guys! <3 ________________________________________________________ Edit : Also, just wanted to throw out there that that's the first time that I've been able to finish a book since the eighth grade (almost three years ago). I'm pretty proud of myself.

Don't have time to give a real reply but is definitely something I've dealt with & have heard of other kids having issues with as well. Right down to the eyelash pulling & mixing print/cursive, actually. I know that LOTS of P.A.N.D.A.S. girls deal with anorexia & other eating disorders, mostly from choking fears or OCD problems & not actual body image issues. I've had more self-image issues than choking fears (which only started late July) but I don't see why it wouldn't be P.A.N.D.A.S. related but it's also very likely that it could just be usual self-doubt at that age made worse by the disease, if that makes sense. Whenever I have more time I'll PM you if you like. <3

I don't have much to contribute but I hope your situation gets better!!! I'm sorry about your little girl, & your dog for that matter. Much love from Texas. <3

If it's mainly tics/anxiety/OCD you're dealing with I wouldn't look too far into Lyme/MycoP unless you're in an endemic area (the only one I've ever heard accepted for Lyme in Texas is Commerce). I'm in DFW myself. If you need any help feel free to PM me whenever you'd like. Also, I'd look more for a family history of screwed up immune systems than actual symptoms like OCD & tics. Out of my eight siblings none tic, I can think of at least half that exhibit OCD type behaviors (one of which is mentally retarded & autistic), but no matter what... ALL of us get ANY bug or whatever else that's going around. Not all people with compromised immune systems end up with P.A.N.D.A.S., but typically it's not too hard to determine how well the immune systems function in your family. Let us know how the titers come back! You said the first rapid was negative.. Has he had strep or any other infections?

Lyme Mom ~ Not really sweats but I do get randomly clammy every now & then for no apparent reason. & I don't know about thigh pains. It's hard to have someone ask "Have you experienced this?" because thinking back over the years it's hard to pinpoint what I felt, when, & to what severity. If you asked me about something little that happened at the same time the Narcoleptic symptoms hit, chances are I wouldn't remember it all. Do you know what I mean? Not saying no, just can't really remember. NorCalMom ~ Thyroid is perfectly fine over here, & so are yawns. The doctors I've seen have been pretty thyroidhappy, so I've been checked up & down over the years. Totally normal everytime. Would the Oxygen levels dropping affect blood pressure? My blood pressure is fine, too, I'm just wondering. Priscilla & GraceUnderPressure ~ That sounds like it. I know it's a normal thing but I only brought it up as something not-so-normal because it happens over. & over. & over. & I've been getting ridiculously upset when I can't get "there". Thank you all!!!

That's the only thing I can really think to liken the "Bump" to. I don't really know how to describe it though. :/ It's just a little feeling where it's okay to let go.

Don't have the time to reply to all posts. :/ No, no antibiotics & DEFINITELY no steroids. We're pretty suspicious of Lyme right now so steroids are a huge no-no. No doctor at all. Thank you, north Texas. -___- It's not really a feeling of not getting enough air, it's just.. A feeling like I need MORE air, for no apparent reason. Not dismissing Babesia though. Already tested positive for MycoP. No treatment for that, either. Doctor washed his hands of me when I tested positive for Lyme. I've got about 100 pages left of Cure Unknown, & then Saving Sammy is next. Thank you all! Tic, compulsion, who knows. & trust me.. I'm not stressing over this. Adding "breathing compulsions" to my list wouldn't faze me. All of the tic/compulsion talk reminds me of once when I showed a doctor the tics in my toes.. He went "Well, Emerson, that looks like a habit." Oh, it's that simple? Well THANK YOU, miracle worker. I'll just make myself stop doing it then. Not like that's the entire reason I was seeing you or anything. Aaagghhh stressful week. :/

I felt a little under the weather about two week ago & never went to the pediatrician (surprise, surprise), so I've been keeping my eye out for new/worsened symptoms just in case. So far, only one. This really, really weird breathing thing. I randomly take a deep breath, & have to suck it in before it passes the bump. Not a literal bump in my throat or anything.. but just. There's this thing that I can feel where the feeling of the air changes. I have no idea what I'm trying to say, but I hope someone gets it. :/ Anyway. If I do't make it over that "bump', if my breath falls before I get there, I have to do it over again until I do. Which doesn't sound THAT bad until I'm sitting there gasping & taking ridiculously long, deep breaths for no apparent reason. I look like a fish out of water. I've never seen/dealt with any OCD issues having to do with breathing. Anyone have some light to shed or experiences to share?? Thanks. <3

"Individuals who experience depersonalization feel divorced from their own personal physicality by sensing their body sensations, feelings, emotions and behaviors as not belonging to the same person or identity. Often a person who has experienced depersonalization claims that life "feels like a movie" or things seem unreal or hazy. Also, a recognition of self breaks down (hence the name)." I've dealt extensively with depersonalization, sometimes to extreme degrees. I definitely wouldn't take comments like "When will this dream be over?" as a forsure sign of it though. Personally, when I "fell in" (what we came to call it), there was absolutely no comprehension or thought to even comprehend things like that. I know that it's not always that severe, but I'd just hate to see someone hear a remark like that & think "Oh, depersonalization" automatically. The first time for me was about two & a half years ago, in my eighth grade English class. It coincided with the first time I just flatout passed out, as well. Now, please excuse me while I go on another one of my rants that no one cares about, haha... We had a substitute that day, & everyone was just goofing off, visiting, & hanging out. I was sitting by myself reading Slaughterhouse Five (can you imagine what a popular fourteen year old I was?? ) when I just... Passed out. It had never happened before, but I slept in class all the time so no one really noticed since I was already sitting down & didn't actually FALL, my head just hit my desk. An hour & a half later, I was still out, DEEP in the most vivid dream I've ever had & STILL remember. When the bell rang a girl shook me awake as she was walking out &, to put it quite simply, all H### broke loose. Depersonalization is even harder to describe than brainfog, which is saying quite a bit. I just started sobbing & shouting "I'm not here". Our substitute spoke literally no English (what a WONDERFUL school district I'm in) & did nothing. I eventually ran out in the hallway, still screaming & crying, students & teachers alike staring openmouthed as I passed. The whole time though i was seriously looking down on myself. When you haven't had one you could take the phrase "out-of-body" experience with a grain of salt, but that's exactly what it is. I was in a movie, in a helicopter, looking down at myself behave in this way thinking "WHAT AM I DOING?!?!?" but had absolutely no control over it. I ran into the bathroom, where one of my bestfriends Victoria was waiting, & I didn't recognize her. She tried to talk to me but I was crying too hard & just kept shouting "I'm not here" over & over. In yet another testament to the greatness of my school district, a teacher came into the bathroom, only to make me go to my History class. When MY teacher asked what had happened I just said "What a joy to feel nothing & still be called alive. I'm not here". I sat at my desk, wrote COMPLETE NONSENSE, & texted my Mom saying "I'm not here. I can't feel because I'm not real." There's a blurred line between depersonalization & deREALization, but I just think they're one & the same. Derealization is the feeling that the world is unreal, not yourself. I've always described it as a detachment. In my understanding depersonalization is just the detachment of your sense of self, if that makes sense. I know it can feel like the world is LESS real or like you are in a dream, but at the worst for me it was literally having no concept of "me". Having no "world". There were times where it did just feel like a movie though. Where I was still looking down on myself, but didn't just lose all control. This is what I wrote when they made me go back to my history class..... "I fell in a puddle of mud in a drain of some sort on the side of the road in my dream. It was so light it was almost white. I had all my hair, I was wearing a black dress, a necklace of feathers, & no shoes. I puked as I fell & I couldn't stop it. The people around me were the best people in the world but only one held my hair while I slipped & fell everywhere, but no one helped me up. I felt numb in my dream, I couldn't feel a thing & I couldn't speak but for a few mumbled sounds that felt like swallowing rocks. Before that Alyssa had taken me to her grandpa's house, a purple, orange & yellow house I had seen during my travels in Sedona, Arizona. A feeling like hollow glass was everywhere, filling my lungs life flowers from a previous dream of mine. I tried to talk to her family but all I could whisper was "What a joy to feel nothing & still be called alive." My tongue stuck to the roof of my mouth as I spoke. I could feel my teeth trying to come out. STOP this Amazing Grace already. I tried to shake myself awake. I saw my peers around me with warped faces & distorted voices. They were all coming for me & I was awake. But now I'm in a computer lab I've never seen before. Coach Shelby walks in & I shout "Ellison!". Coach Shelby Ellison tells the teacher to leave & she scurried out like a mouse. Sits me down. "Who does drugs?" he asks me. "Why go looking for the people using them when you could just go for the drugs themselves?" my mouth is sopping wet & bone dry. My cheek sticks to my teeth while I drool as I speak. I can't control it. It's not my fault. Some music from the other side comes in & I feel my heart pulsing through my entire body. I can't feel hear, or see anything but. Louder & louder until I'm with those warped faces again. They're all card characters. No. They're some Gonzo brainchildren. I'm falling still, slipping, & sliding in mud. The sidewalk's right there, the green grass is right there, but I don't even notice because I'm too busy puking, choking, & spitting. "Will you be okay? Can you do it?" "Don't I always? Nothing hurts." & then the hollow feeling comes back. Breathing it in, cold. Ugly colors are everywhere & I'm alone. I think I woke up but these people aren't real & I'm not here. She shook me awake but I'm not here. I can't feel anything, my entire body is numb & what I do hear over my racing heart & lungs I can't even understand. No one's speaking but everyone is. I'm in a helicopter, walking, I'm crying. I'm a detached person who is most importantly still not here enough to be writing. I need my mom. I have a headache & a pit in my stomach." & this is what I wrote one night after walking a mile home when I "fell in" at a coffeeshop with some friends.... This one wasn't nearly as intense as the other one. "& it's always when I get that detached & I start biting off my pretty nails & chewing on my poor knuckles that I write things that I won't understand in the morning. I've thought about this, & maybe it'll make more sense than the last time. My breath is caught in my throat & I hate it. I can barely breathe but I can feel it in there. I don't know what it is or why it's there, though. Hiding in that throat. I just get so gone, so detached that I can't even hold onto NOW anymore. Nothing anyone's saying to me makes any sense & I have a hard time answering questions because I don't know who they're asking. Me? Who is me? I feel like my heart is crashing into my stomach. I only feel better when I don't sleep. Keep me up, please. I hate sleep. I hate it more everytime I do it. The more I sleep, the farther away it takes me. I don't know where I'm going but I want to come back to here. There. Anywhere. I don't like posting this because everyone will think I'm crazy but I have to. I'm not crazy, I'm not on drugs, I'm just not here & that scares me very, very, very much. I wish someone was home. I have to be here but no matter how hard I try I'm still stuck wherever I am. I can't feel anything but I know I'm typing. The lights have been flickering all day, & I need to tell Todd so he can chart it. I hope I'm not crazy. I can't tell if I'm about to puke or pass out or something else entirely, but either way it is probably best to step away from the white duvet."

I had to chuckle derisively at those couple of sentences -- not that you said them, but how true they are. No offense to any physical education teachers among these ranks because I'm sure that you are unbelievably observant and sensitive to challenged kids, knowing what you know from your PANDAS life experiences. But our DS has had nothing but blind and ignorant physical education teachers for the duration of his academic experience to date, and that's been 8 full grades! Last year, when the exacerbation first hit, we actually scheduled a special meeting with the P.E. teacher, the school psychologist and the head of the P.E. Department because the teacher kept downgrading DS via her "rubric" because, in volleyball, basketball, etc., instead of going for the ball, DS would back off and let one of his more enthusiastic, athletic team mates take it. DS's take on it was he isn't very athletic, he'll miss the shot and get scorned or stared at for poor performance, and he's not comfortable scrambling in a group of kids for the ball anyway, so why not do what's best for his team and let someone more capable take the ball and make the shot?! She read it as lack of effort and team spirit, however. Plus, it didn't make her "rubric" for "skills," to which I promptly told her that making a basket wasn't a "life skill," but learning how to advance the best efforts of all the members of your team WAS a life skill, and he should be rewarded appropriately for knowing what best served his team! Then I also explained that he has a condition that makes him anxious, and "mixing it up" with a bunch of other boys stokes his anxiety, so that contributes to him backing off, also. To which this woman actually replied: "He doesn't seem anxious to me. I've seen no signs of anxiety." This, in the midst of an exacerbation that, less than a month later, made him incapable of attending school at all! I wanted to throttle the clueless wench. My personal favorite was when I was trying to get a transfer to one of the "white" highschools in my district. Better teachers, better funding, better school in general. You get the drill. My Mom sat down with the head of student affairs for my district & explained my situation to her. This was only a couple months after the Narcoleptic symptoms set in, I was sleeping sixteen hours a day & definitely needed a change of scenery if I was expected to survive my freshman year. My Mom brought papers about P.A.N.D.A.S., letters from neurologists, physicians, psychologists, all explaining that stress would make me nothing but worse. My Mom explained to this woman, whose name was Karen, that this was the second worst exacerbation we had ever been through, & that if I ever needed to be around people who understood my condition & knew how to handle me, it was now. It wasn't about being around my friends for fun or anything, I ended up going to one of the "white" schools anyway & slept through an entire semester, it was the if factor. IF something happened at the school that I was supposed to go to, I had no one. IF I had a meltdown, IF I passed out, IF I started hallucinating... No one would be there. As helpful as teachers & faculty are, you can't inform EVERYONE & expect them to always be around, especially in schools as colossal as the ones in our district. This woman didn't so much as blink when she took off her glasses, turned in her chair, looked my Mom in the eye & said "Erica, I had a sweating problem in highschool. Your daughter needs to learn to make friends just like I had to." When the story was relayed to me I just kept thinking thank GOD I wasn't in the room. Needless to say, my transfer was denied. Looks like P.A.N.D.A.S. is really just a socializing problem, you guys. This student affairs lady (along with your PE coach) obviously know better than all the doctors, of course.